If you are not Stage IV but have questions, you may post here
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hello I'm off to the doctor on Thursday to get a ultrasound and biopsy done, on my chest because I found a lump and seen my doctor to have her tell my there is 3 lumps there !! I have just finished all my treatments in March and just finished a hysterectomy 2 weeks ago . Was wondering if anyone has found lumps on there chest even after a double mastectomy? A little freaked out !!! All the lumps are in different spots !! Would love some info
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I had a lump that surfaced 5 months after the mastecyomybut it was an internal stitch that didn't absorb. It was painful to touch my incision where it was underneath.
The MO was very concerned and sent me right to the BS but it was OK. Hope yours is too!
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Is it normal to be stage IV NED and on no meds? My mom has been NED for about 6 mos and her onc wants to stop all her treatments for 3 months and then do a scan. I am worried about stopping meds. She is on Herceptin.
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Hi Almasi. If your mom has been on Herceptin alone and her onc wants to give her a break then thats a good thing. It's not unusal to do this and three months is not a long period for a break.
Love n hug. Chrissy
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Hello ladies. I'm hoping someone can give me some advice or maybe reassurance. I finished chemo November 19th. About two weeks before, I started getting a weird feeling in my right hip. It didn't hurt but felt weird. At first my MO thought it was due to the chemo but it didn't go away after I stopped. We had a few other ideas...I gained 18 lbs from chemo but didn't buy new clothes so they were pretty tight, I did a lot more sitting during chemo than I have in the last couple years, I started walking and running (with elevation) on the treadmill five to six days a week when I've never really been much of an exerciser. the spot seems to move a little around the hip. Sometimes above the hip, to the left and the right. I had an X-ray done in April that came back fine. No arthritis or any other signs of metastatic lesions. My Dexa scan showed my bone density as good in both my hips. I realized the end of June that it had gone away. The beginning of July I took several long trips and the feeling came back. These were very long car trips. I don't have any problems running, walking or laying on my hip. I can even push on it and it doesn't hurt, just feels weird. All along my MO has said she doesn't think this sounds like mets. We've agreed to do a scan if this doesn't go away in a few weeks. Just tired of worrying about it. I'm sorry this is so long. I just don't know what to think anymore. Thanks in advance for any help!
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Mommato3, my first thought is Anastrazole might be the culprit. I know you said it started prior to chemo ending, but the chemo and being less active might have initiated the pain (like mild arthritis) and the Anastrazole is now keeping it going.
You're doing absolutely the right thing having it checked out, and having a scan in the near future sounds like a prudent thing to do, if only to ease your mind. But with a Stage 2 dx and no nodal involvement and having just chemo, it seems highly unlikely that the feeling you're experiencing in your hip has anything to do with a recurrence. (((Hugs))), and please keep us posted! Deanna
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Hi Mommato3, I agree with Dianna, it is most likely from the Anastrozole as all of the AI's dry out tendons and connective tissue which causes arthritic type pain. Try taking some condroiton and omega 3 in higher doses while you are waiting for your scans, it won't hurt and it just might help.
Good luck and please let us know the outcome.
Love n hugs. Chrissy
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Thanks Chrissy and Deanna. I'm not sure it's from the Anastrozole since I started with Tamoxifen in December and didn't switch until April. Unless of course Tamoxifen can cause the same issues. The weird thing is that it really only bothers me when I'm sitting. Especially if I'm wearing stretchy/cotton type shorts/capris. I can stand, walk, run, and lay with no problems. That's why my MO thought it was inflammation caused by chemo and then aggravated when I started doing a bunch of fast walking and running. Which I didn't do before my diagnosis! I'll check back in when we figure out the problem.
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I had hip and knee pain on and off prior to dx and some flare ups since. I'm not too worried about it being mets because it comes and goes. Long rides in a car definitely set off the hip pain and therapeutic massage feels oh so good. There's some little muscle in my glute area that when the therapist touches it I can tell thats where the problem is coming from and massage brings much relief. Highly recommend it although it doesn't do much for my knee, I think that's just getting worn out. Massage also helped the plantar fasciitis in my heel.
Since going on arimidex I have noticed increased stiffness, particularly in the areas that I had previous problems with.
Good luck to you and hope your pain subsides.
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Hi Mommato3... I hope you are doing well. And pardon me for barging in with my thoughts. When I read your post, it seemed to me that you may be suffering from a circulatory issue, especially when you mentioned that it "came back" after a couple of lengthy car rides and is more pronounced when you are sitting. The sitting position along with tight, stretchy clothing could be putting pressure on your veins and there may be a problem there that needs to be checked out. Just a thought.
MsP
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I do still have a little bit of stiffness from the Anastrozole but it's when I first get up in the morning or after I've been sitting a while. The car ride does seem to be what set it off again. We drove from Ohio to S Carolina, back to Ohio from S Carolina, Ohio to Chicago, flight from Chicago to Vegas, flight back from Vegas to Chicago and then drove straight to Ohio after the flight, Ohio to Indianapolis, then back home to Ohio All this in just under three weeks. Can I say I'm tired!?!
MsPharoah, what kind of circulatory issue? All winter I wore tight/stretchy yoga type pants. My hip would feel better if I pulled the pants down below my hip. When I'm home of course. 😀. It felt like too much pressure. I even stopped wearing underwear to bed at night to give my hip a rest. It always felt better when I did. Crazy!!
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Momma, a circulatory issue where the blood flow to certain parts of your body is being partially blocked or diverted due to a blockage.
MsP
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Hi ladies! I am trying to find people who might have some experience with Abraxane? I developed a severe allergic reaction to taxol during infusion 1, but then also had an unexpected and severe reaction at infusion 7. As a result I am switching to Abraxane tomorrow. I'm nervous and not sure what to expect. Do I still get steriods? Are there other pre meds? Are the side effects similar to taxol? Anyone have an allergic reaction to Abraxane? Thanks so much...
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Hi Tresjoli, I was switched to Abraxane from Taxotere after an allergic reaction also. I did not have any problems with it, but I did get dexamethasone the day before, day of and day after and also massive amounts of benadryl. I only had two doses of it as I was allergic to Herceptin also and so it was all stopped. I wish you well.
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my mum is stage 4. What can white blood cells in a urine sample mean?...bit worried. She has occasional burning but not constant and no infection
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Hi Papillon. White blood cells in the urine is an indication of inflammation and or infection somewhere in the urinary tract which can be kidneys, bladder and all tubes that join them. It is quite common for those of us on constant treatment.
Let her doc know so it can be sorted.
Love n hugs. Chrissy
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so it's not a sign of cancer elsewhere? Every new symptom is so worrying. But as always you calm me xxx
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Hi there. Its not a sign of cancer! Its a sign of a urinary tract infection! Is your mom currently on chemo? That would make her much more prone to any infection. Good luck!
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The doctor already tested twice, no infection. She has just had three months off chemo (after pretty much two years on)
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hi ladies
I hooe you can help me feel more at ease.
I have been diagnosed but staging will happen after my umx on aug 31. I did have a bone scan yesterday and saw 2 places light up on the screen above my head when they were scanning my torso. I am freaking out.
How did you all get to stage iv, was it right from the get go or recurrence? I am so sick with worry I cant even go to work today.
Kim
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Papillon, it's not just infection but inflammation and inflammation doesn't show up on testing. I would think that your mom's doc will keep an eye on what's going on with her just in case this is a prelude to an infection. I have never heard of WBC in the urine being an indication of a progression but I think I would pose that question to her doc just to ease your mind fully.
Hi Kimmer, I fully understand that you are terrified right now as we all were but please try not to let your mind go places that scare the dickens out of you. Bone scans can show up arthritis as well as cancer and it is very possible that is what you saw. While there are quite a few who are dx at the get go as stage IV it's really not as common as you would think. We are not medicos here so trying to read our own scans etc is not really a good idea........yes, over time we do learn an awful lot but it's best to wait for the official results from our docs.
I wasn't dx stage IV until five and a half years after my original dx and that stage IV dx was six and a half years ago so, even if you were stage IV it is not necessarily a death sentence as many of us live for many years.
Try to take a few deep breaths and relax a little, stay busy and wait until you get your final results after your UMX. One day at a time is always a good way to help get through this most trying of times. Sending you some gentle ((((((hugs)))))) to help get you through.
Love n hugs. Chrissy
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Hello, New Here....
I am 63 years old and was diagnosed in 1997 Stage11-B lobular 2 pos nodes out of 38 +est prog+ -h2nu Was not a fast growing cancer. Did Ad, Cy and radiation. Tamoxifin and femmara, Been cancer free for 18 years. In May I had what I thought was sciatic pain that I had back in 2007 and had a spinal lamenctomy done. I went back to my ortho dr and an mri showed some scattered light images so they suggested a bone scan. Did not see a lesion in spine. Bone scan came back with abnormal uptake in my ribs, illiim pubic bone, and femur hips. Xray was done and they said the areas on the bone scan were degenerated disease BUT they found a 3cm lytic lesion on my illium across from my si joint. My mammo was done and they found 4mm cyst that was not cancerous from the needle biopsy. Oncologist had me do another another ultra sound after the biopsy (3 weeks later) in that spot is now a nodule which they are biopsy on Wed. I know the lytic lesion is not a good sign and I probably have bone mets . I did get an epidural steroid shot for what we thought was disc compression from slipped disks and the pain in my back and down my leg is gone. Maybe a tad bit ache in the si area where the lesion is. The plan is for a bone biopsy after results. Could a bone lesion on X-ray be anything else other than a bone met? Also my liver Alk Phos was 50 points high but calcium was normal and white cells normal. Sorry For not posting in the correct way- Thank you.
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Hi LovesMaltese and welcome. We were all newbies at one point so don't worry about wether you posted correclty or not.
Right now I can hear your fear and that is not unusual.......just remember, while all the investigating is going on nothing is for sure. Try to take a deep breath and stay as busy as possible until all tests are done and you have a verdict.
Having mets is not a death sentence like it used to be, there are many living long productive lives as there are so many options for treatment.
Stay in touch and let us know how you get on or just keep asking questions.
Sending love and gentle ((((((hugs)))))) to gelp get you through the coming days, weeks.
Chrissy
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I have an update for you ladies. I was having problems with my hip that we thought was probably exercise related. My insurance wouldn't approve a PET scan so MO decided on a bone scan. All came back clear. Well, the report showed a slight uptake in my shins. The diagnosis is shin splints there. My MO got a chuckle out of that. Said she'd never seen that on a report before. No lesions, arthritis or issues with tendons or ligaments. Still not sure what it is but I decided to give it a couple months of no running. If it doesn't clear up, Mo will refer me to a physical therapist. Thanks for your help
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Hi!
A question about getting a bone biopsy. I was diagnosed with triple positive IDC in late June 2014. I then had a PET scan. In addition to the cancer in my breast and lymph node, MO saw something "light up" on a hip bone (the femoral neck). After five months of chemo, the PET scan showed that my breast and lymph node were clear but that the thing on my hip bone was still there. After six months of hormonal therapy (Aromasin), I had another PET scan and the thing on my hip bone was still there. However, CT scans don't pick up the thing on my hip bone, and MO said that most surgeons won't biopsy something they can't find on a CT scan. However, she has ordered an MRI to see if that will pick up the thing on my hip bone. If the MRI finds it, she will try to get a surgeon to biopsy it. Is that weird? If "the thing" is a met, why wouldn't we see it on both a PET and CT scan? Thanks for any ideas or thoughts....
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Hi Mommato3 and thanks for your update. Sorry to hear about the shin splints as they can be quite painful. Here's hoping you two month no running rest solves the problem for you.
Hi Elaine i would be thinking that whatever that thing is, I doubt it would be a live met as you have had a full treatment of chemo as well as months of Aromasin. It may well be it was a met which is now necrotic but still shows on bone scan as it is damaged bone.
Quite often CT's and PETs don't show some things which do show up on Bone and MRI's. Try not to worry too much right now intil you have the final verdict from your scheduled MRI and then go ftom there.
Love n hugs. Chrissy
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Hi Ladies,
This may sound like a silly question to some, but its been on my mind for a while and am quite stressed about it. I've been reading a lot of post here and was shocked to see how many women went from stage 1, or stage 2 to stage 4. I was diagnosed 2 years ago with stage 1 grade 2 er+ her2 - and my onco type score was 25. My oncologist suggested that i skip chemo because of my age...she said that at 43 I was young and the benefit of chemo was too small (2-3%) and the side effect would out weigh the benefits. I recently looked at all my reports again and found that my rate of recurrence is 20%. I find this to be very scary! Can any of you please tell me what I should do to make my chances better....or is it all just a crap shoot and we just wait and watch...
Thank you for your time and for this great thread to help the rest with so much more info than what we got from our Dr's. God bless you all!
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Hi 4love. When we are first dx we make decisions based on information and advice from our docs and for the most part that's the perfect way to go as they have the expertise.
Later when we read what others have done we begin to doubt what we did. .......was it the right treatment?......did I, with my docs, make the right decision on treatment that will guarentee this won't return?.........will I be at risk for the rest of my life?
These are but a few of the questions that seem to arrise.
With everything that I personally have read on BC and progression to srage IV the bottom line seems to be that there are no guarantees.......ever......that once initial treatment is done that it won't return at some later date. Statistically they say that 25 - 30% will end up at stage IV regardless of what stage initial dx is.
What I'm trying to get across to you is, the best any of us can do is be happy with what we did and just continue to be vigilant with regular check ups and scans where necessary. You may never have to face a recurrence but if you constantly worry that you will, you will in fact be missing out on the joys that living your life can bring.
Love n hugs. Chrissy
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I was stressing over eating non organic strawberries due to the possible pesticides and having slathered my body with lotion (which I got as a get well gift) that has parabens in it. My daughter that's finishing med school said that what she think a big factor is that when we stress over the uncertain future it raises our cortisol levels. This could have a worse impact than all the other things.
I had a similar profile with the once of 25 and am now struggling with the after effects of chemo. Wondering if it was worth it. Going to let it go and do some relaxation meditation.
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Thank you Chrissyb for your response. I do try to enjoy my life as much as possible, infact since my diagnoses i've made it a point to "live" and not just go through the motion of living....but still wish with all this money that is raised every year, someone would come up with a cure to this nightmare!
Chloesmom, that's the whole thing with this silly cancer.....your damned if you do and damned if you don't...
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